Persons with acquired brain injury (pwABI), due to either stroke or trauma, can experience long term changes in participation across multiple facets of life (1–6). Acquired brain injury (ABI) has been found to result in a higher prevalence of disability when compared to the general population (7), and to result in long-term impacts on daily function (8). Helping pwABI engage in valued tasks and roles is a goal shared by pwABI, their families, clinicians, and researchers (9–11). The International Classification of Functioning, Disability and Health (ICF) terms this aspect of functioning, “participation” and defines it as “involvement in a life situation” (12, 13). Research aimed at improving participation post-ABI, however, has been hindered by well-recognized challenges in participation measurement, including acknowledged inconsistencies in how participation is defined (9, 11, 14–19).

Understanding how pwABI define and conceptualize participation is a critical part of measuring, and thereby improving, participation for pwABI. Qualitative research provides an avenue for direct insight into the perspectives of pwABI (9, 10, 20). Results from several qualitative studies related to participation have identified subjective and contextual elements of participation, such as satisfaction, agency, and environment as important to stakeholder groups (9–11, 19, 20). Synthesizing evidence from qualitative sources defining participation will help to identify the aspects of participation important to pwABI. Characterizing this information using a widely accepted framework can help inform a person-centered approach to participation outcome measurement and improve understanding of participation following ABI (18, 21–24).

Qualitative syntheses provide a systematic approach to compiling findings from multiple qualitative studies (25, 26) and may help to characterize how pwABI perceive participation. The qualitative synthesis approach has previously been used to explore facilitators and barriers of participation post-stroke (27), and to explore views about participation among individuals with stroke in the UK (10). The ICF, published by the World Health Organization in 2001, is the predominant biopsychosocial framework of health used in disability and rehabilitation research (12). The ICF is designed to provide a universal classification of health and disability and to create a common language to enhance comparability of healthcare information from multiple sources (12). Specific ICF linking rules have been established to help characterize health-related information from multiple sources (22). Earlier iterations of these rules have been used to link participation-related qualitative data and outcome metrics to the ICF (15, 23, 28), and to link themes from qualitative syntheses to the ICF conceptual model (29).

To extend this work, our objectives are to (1) conduct a scoping review of qualitative literature that defined or characterized participation from the perspective of pwABI of any type (i.e., not limited to individuals with stroke), (2) synthesize how pwABI define and categorize participation, and (3) link the themes identified in the qualitative synthesis to the ICF using standardized linking rules (22) to enhance the comparability of our findings to other types of health information, including standardized outcome measures.

This paper aimed to (1) conduct a scoping review of qualitative literature that defined and characterized participation from the perspective of pwABI of any type, (2) synthesize how pwABI define and categorize participation and (3) link the themes identified in the qualitative synthesis to the ICF using standardized linking rules. Four analytical themes emerged from the existing literature: (1) Essential Elements of Participation, 2) How pwABI Approach Participation, 3) Where pwABI Participate, and (4) Outcomes of Participation. These themes and their related subthemes discuss participation in both conceptual and literal terms.

Rather than exploring what influences participation (e.g. barriers and facilitators), this paper aimed to draw from the small body of existing qualitative literature in which pwABI highlight the concepts they consider critical to participation. This review focused on article content that explored the underlying constructs that define participation rather than the variables that affect it. Not surprisingly, environment often played a key role, and participants classified environment as an important determinant of participation in all of the articles reviewed (47–52). Environment is known to heavily influence participation (9, 54–56), and many researchers have discussed the challenges of distinguishing between environment and participation in the ICF (18, 54, 55). Some leaders in the participation measurement field have also argued that while the intersection of environment and participation is important, conflating environment as part of participation, as opposed to an impacting force on participation, has contributed to flawed measurement of both participation and environment (18). Therefore, while environmental factors were included in themes when they were discussed as part of what defined participation, references to environmental factors that were mentioned purely as barriers and facilitators of participation were not included.

The descriptive theme most representative of the challenging intersection between environment and participation is the theme, Being Included. As noted above, this theme represents how being valued, respected, and treated as an equal member of society is integral to participation. This theme's relationship to society illustrates how some characteristics that pwABI consider integral to participation intersect with the environment. This aligns with Heinemann et al.'s work on the concept of enfranchisement (54, 57), which included one of the studies featured in this synthesis (48). Enfranchisement is a multidimensional construct that represents a person's perception of how their community values and supports their participation, and a person's resultant ability to participate according to their personal preferences (54, 57). Societal inclusion was emphasized as a defining component of participation throughout the literature in this synthesis (49–52).

The findings from this study are mirrored in other qualitative studies and syntheses of both ABI and other populations (9–11, 20). Our theme, Self-Directed, was reflected in articles by Van de Velde et al. (20), Martin Ginis et al. (11), and Woodman et al. (10). Van de Velde et al. (20) found that individuals with spinal cord injury highly valued their ability to make choices about their activities (20). Though several of the articles in our synthesis related meaningfulness of activities to choice (49–52), participants in Van de Velde et al. (20) felt that the ability to choose activities regardless of meaning, (e.g., activities that had no overt goal or direction) was an important part of participation. Similarly, when looking at the concept of participation in persons with disabilities, Martin Ginis et al. (11) identified themes related to choice and control, and to being valued and accepted by society. Martin Ginis et al. (11) also identified a theme related to “feeling appropriately challenged,” which was not overtly evident in our synthesis. Participants' desires to be treated equally and not be underestimated were, however, captured within our Being Included theme (47, 48, 50–52). Woodman et al. (10) also identified a theme of “pursuing personal choice,” which captured elements of our Self-Directed theme (10).

Elements of our theme, Do or Don't Do Mentality, were also reflected in Woodman et al. (10), which described references participants made about beliefs that they would persevere, or “beat” their injury (10). Whereas, some literature characterizes similar concepts as avoidance and endurance, noting the negative impacts that fear avoidance and “pushing through” despite limitations may have on symptom management (58), Woodman et al. (10) largely characterizes these findings as part of a process of reacclimating and reassessing. Similarly to Woodman et al. (10), the theme of Do or Don't Do Mentality from our synthesis cannot be definitively characterized as adaptive or maladaptive. Instead, the theme is reflective of a mentality about participation that participants expressed, the manifestation of which could vary by participant. Elements related to our Adaptation theme were also present in Woodman et al. 's (10) themes of building individual confidence and pursuing personal choice. Additionally, though termed “Having a sense of importance by doing” in one paper (20) and “Meaning” in another (11), content related to our theme, Contribution, was also prominent.

Van de Velde et al. (20) also highlighted the way in which participation can serve to fill time for participants, and how it can promote a sense of achievement, as outlined in our Outcomes of Participation descriptive themes. Sense of Accomplishment was captured under a broader theme of mastery in Martini Ginis et al. (11), which also divided “engagement” from choice, while we found references to choice and control generally quantified engagement and meaning in relation to personal interest, e.g. choice. Though outcomes of participation were discussed within the context “evaluating personal meaning,” Woodman et al. (10) captured similar outcomes from the articles she synthesized to those in this synthesis, such as Sense of Belonging and Sense of Self.

Though framed under different themes, each of the studies noted the impact on and importance of social relationships in ways that aligned with our Social Interactions and Relationships descriptive theme (10, 11, 20). Van de Velde et al. (20) also emphasized the importance of social interaction in terms that aligned with our descriptive theme of Being Included, but stressed that participants also defined participation as something that exists in a personal, private, and non-social context. Though not prevalent in our synthesis, there were quotes and observations that referenced the importance of individual, non-social, and independent activities, and a similar emphasis by authors of one of our synthesis articles, Hammel et al. (48). We generally captured these quotes in other themes such as Self-Directed or Normative Function (50–52). Further exploration of how pwABI may differentiate between the meaningfulness and importance of individual vs. social activities could help to refine definitions of participation and participation goals.

Several articles have articulated the challenges of integrating the ICF conceptual framework of participation with the perspectives of stakeholders (10, 11, 24, 54). Challenges of integration are echoed in the findings of this paper as some key elements of participation identified by pwABI could not be easily linked to a single category in the ICF. Several of the descriptive themes identified in the synthesis could not be linked beyond the component level of the ICF, or had “unspecified”, “other specified”, or main concepts that were not included in the Core Sets. Other qualitative syntheses highlighted similar issues with relating nuances of their themes to the ICF (10, 24).

An exception to these critiques is the summation of stakeholder perspectives on participation done by Magasi et al. (9). This paper reports on a large qualitative data set, which includes a data set published in one of our synthesis articles (48). The key domains identified by Magasi et al. (9) aligned with d7 “Interpersonal interactions and relationships”, d8 “Major life areas”, and d9 “Community, social and civic life,” specifically in the realm of “Recreation and leisure”. Our paper also found that d7 “Interpersonal interactions and relationships” and d9 “Recreation and leisure” (47–52) were key areas under Where pwABI Participate, though they were not necessarily part of how people defined participation. Our results further paralleled Magasi et al.'s (9) findings in that, while work did matter to participants, it was referenced far less often as a site of participation than the former two domains.

Our study findings highlight a relationship between our descriptive themes, such as Self-Directed and Advocacy and the ICF codes d940 “Human rights” and d950 “Political life and citizenship.” These categories most frequently align with the ways in which people define participation or think about approaching participation in our synthesis. As noted in the results section, these categories are not part of the ICF Comprehensive Stroke and TBI Core Sets (40, 41), and therefore are not considered by the ICF to be “essential” to people's function in these populations (42). Our paper identifies the potential importance of these categories to this population, a finding which aligns with recent research done in the field of TBI (59) and expert perspectives in a research symposium related to participation measurement (16). Many of the components of participation identified in this synthesis represent themes that are both challenging to orient within measurement and standardized models, and critical to how pwABI identify the construct of participation.

There were several limitations to this scoping review and synthesis. First, given the small number of qualitative articles addressing how pwABI define or conceptualize participation, it was not possible to address different types of brain injury separately. Three articles consisted solely of stroke participants (49–51), while others were a mix of persons with TBI and stroke (52) and TBI, stroke, and “other” (47, 48). Though themes did not seem to vary notably across stroke and combination articles, it is possible that the themes here are less representative of people with TBI. There may be differences between the perspectives of persons with TBI and persons with stroke that we were not able to identify. The small number of articles must also be taken into account when considering the applicability of results to the diverse experiences of pwABI. As noted above, qualitative research and particularly synthesis, relies on interpretation (10, 11), which can impact the results. To address the potential sources of bias we included three researchers in the formation of codes and themes, followed standards of independently attributing text to themes, compared levels of agreement, and discussed descriptive and analytical themes as a group to reach a resolution. It is also worth acknowledging that the CASP, while considered credible, has been critiqued for its limitations in addressing theoretical consistency in articles (35, 36). We also acknowledge that while initial agreement of ICF linking was strong for more granular descriptive themes, such as those under Where pwABI Participate, themes that encompassed more abstract information and larger sections of the ICF model as a whole, such as those under Essential Elements of Participation, were more challenging to link and required more discussion to reach agreement. Further, challenges outlined in previous works surrounding ICF linking were present throughout the linking process (60). The inclusion criteria requiring English language articles also increased the likelihood that results were predominantly reflective of the values and populations of western countries, and therefore limits the potential scope of the findings to western cultural contexts. Future research should focus on expanding data examining how both ABI and TBI stakeholders define participation, and efforts should be made to address the paucity of TBI-specific literature in this area. Additionally, researchers should try to explore this question in racial, ethnic, and cultural groups underrepresented in current literature. Research such as that done by Magasi et al. (9), which compared the perspectives on participation across different stakeholder groups, could serve as a guide for exploring these issues in neurotrauma.

In this paper, we synthesized qualitative literature that reflects how participation is defined by pwABI and linked the resulting themes to the ICF. Our objective was to lay a foundation for better understanding how pwABI define participation, and how research and clinical fields can further identify and address stakeholder perspectives. We identified themes that illustrate how pwABI discuss participation in terms of its essential elements, their approach to how they participate, the domains in which participation is most important, and common outcomes of participation. Our results provide insight into the complexity of perspectives on participation among pwABI and illustrate aspects of participation that should hold elevated importance to clinicians and researchers as they try to support participation of pwABI.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

CR, EE, CW, MS, and LK contributed to conceptualization of the project. CR, CW, and EE contributed to methodological development and analysis. CR and CW contributed to writing of the original manuscript. EE contributed to redrafting of the first manuscript. MB, LK, MS, EE, KE, CW, and SB contributed critical revisions of the work. All authors contributed to the article and approved the submitted version.

This review was funded by the National Institute on Disability, Independent Living, and Rehabilitation Research 90DPCP0008.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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